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    #16
    Ellie - not sure. Meds haven't changed for months. But maybe my mouth is opening? I do think my breathing has changed, but CO2 test was fine last time.
    Diagnosis confirmed Jan 2022 (age 46) after several years ignored/ misdiagnosed.

    Symptoms began in left foot 2017. Now mainly left side, speech and some loss on right side too.

    Unable to walk unaided (powerchair user), poor speech, left hand behaves like a drunk toddler but generally positive and determined.

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      #17
      TinyLady It's pretty common for the mouth to fall slack when honking zzzzs, even a little bit is enough to cause a Sahara mouth.

      If it is from that, there are 50 Shades style head straps you can get which keep the mouth closed but, if you can't take it off in an emergency situation - I've moved off 50 Shades and moved to the reality of being sick - they're best avoided. xx
      ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
      Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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        #18
        Wow Ellie - that sounds brutal. Might stick with dry mouth and coughing for now 🤣
        Diagnosis confirmed Jan 2022 (age 46) after several years ignored/ misdiagnosed.

        Symptoms began in left foot 2017. Now mainly left side, speech and some loss on right side too.

        Unable to walk unaided (powerchair user), poor speech, left hand behaves like a drunk toddler but generally positive and determined.

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          #19
          TinyLady have you had overnight oximetry tests lately? I don't cough at night. Could it be saliva build up.

          Its a minefield all these is it or isn't it a new symptom. X
          Diagnosed May 2021 bulbar onset als.

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            #20
            shelly21 - no overnight oximetry since January. But Leicester have agreed to do a sleep study on me next week. Not sure what that involves. They arranged it at my last visit there. So hopefully if anything is going on that will pick it up.

            The symptoms are so varied and when we have no regular support you end up trying to piece together yourself what might be important don't you? xx
            Diagnosis confirmed Jan 2022 (age 46) after several years ignored/ misdiagnosed.

            Symptoms began in left foot 2017. Now mainly left side, speech and some loss on right side too.

            Unable to walk unaided (powerchair user), poor speech, left hand behaves like a drunk toddler but generally positive and determined.

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              #21
              TinyLady thats good re sleep test. I don't know what it entails but I'm sure someone will assist on here.

              I bet people don't get a lot of sleep in an hospital bed 😴. Glad they are monitoring you though.

              Keep dreaming of that shiny new wet room xx
              Diagnosed May 2021 bulbar onset als.

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                #22
                Originally posted by TinyLady View Post
                Leicester have agreed to do a sleep study on me next week. Not sure what that involves.
                I've had 2 inpatient full sleep studies, neither of which involved me getting much actual sleep, but both involved lots of study.

                Various sensors and electrodes were attached to my head, chest, leg and ear, a fingertip monitor and a nasal monitor (I think the nose thing may only have been done once?)

                I was so conscious of being wired up that I didn't sleep well, but they did get enough data.

                The overnight pulse oximetry test done at home, coupled with CO2 testing, is a good indication of how we cope during sleep.

                Take a selfie 😂😘
                ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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                  #23
                  Ellie - I'm being given the equipment to put on at home and then return it the next day... my poor husband will be in charge of strapping it all on. Like you say, I doubt there will be much sleeping. Apparently it even has a microphone. So probably just hear the cat purring and hubby snoring 🤣

                  Diagnosis confirmed Jan 2022 (age 46) after several years ignored/ misdiagnosed.

                  Symptoms began in left foot 2017. Now mainly left side, speech and some loss on right side too.

                  Unable to walk unaided (powerchair user), poor speech, left hand behaves like a drunk toddler but generally positive and determined.

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                    #24
                    TinyLady Oh, that's much better Tiny - the 'at home' kits are much less invasive (no curry that day in case the microphone picks up bottom burps 🤭)
                    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                    Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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                      #25
                      Any untoward noises will be blamed on the cat.... he can't dispute it 🤣
                      Diagnosis confirmed Jan 2022 (age 46) after several years ignored/ misdiagnosed.

                      Symptoms began in left foot 2017. Now mainly left side, speech and some loss on right side too.

                      Unable to walk unaided (powerchair user), poor speech, left hand behaves like a drunk toddler but generally positive and determined.

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                        #26
                        Amitriptyline makes my mouth incredibly dry first thing in the morning,

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                          #27
                          Originally posted by Bill View Post
                          Amitriptyline makes my mouth incredibly dry first thing in the morning,
                          Often Amitriptyline is prescribed because of that side effect - if the dry mouth is causing you unwanted problems, you can ask for a different SSRI.

                          If it was prescribed to you to reduce saliva, I guess it's working - if you think it's working too well, maybe the dose needs to be tweaked? xx
                          ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                          Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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